Cancer Trials Australia joins data-sharing platform

You may have considered donating blood, but what about your private information?

Australians will be able to donate their health and social-media data to medical research via a platform created by Silicon Valley data-management company ShareRoot.

People suffering cancer, Alzheimer's disease, Parkinson's disease, stroke and mental health issues will be invited to join the online platform, called MediaConsent, and donate data from their social media accounts, digital health wearables such as Fitbits, and medical records, with the aim of helping research.

"I would love the idea of people being able to donate their data to medical research. I think that would just be brilliant," said Michelle Gallaher, who spearheads the MediaConsent project at ShareRoot.

ShareRoot will announce on Wednesday that Cancer Trials Australia has opted in to the MediaConsent project. Melbourne's St Vincent's Hospital and Neuroscience Trials Australia have also joined.

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"A platform like this could really democratise and transform clinical trials, enabling so many more people to participate in research, particularly in remote and regional areas," said CTA chief executive Kurt Lackovic.

MediaConsent is an intermediary information-sharing platform that links users' data, such as how many steps were recorded on their Fitbits, with organisations that want to use the data for clinical studies. Patients who use the platform can choose which organisations they share their data with, and can switch sharing on or off as they wish.

Strength in numbers

Australians should be able to use tools such as MediaConsent to harness their private data and sell or donate it, said Ms Gallaher. "I think we should be able to commercialise our own data. I think that's fair and right. Why should we let bigger companies commercialise our own data? We're creating this amazing resource, and we should have control over what we want to do with it, and what I want to do with my data is donate it to research," she said.

"Data is not valuable as data itself. Data is only valuable if you have a tool that can help you ask the question and access the data in meaningful ways, and that's what MediaConsent does."

Ms Gallaher said the application potential for MediaConsent stretched much further than its current use in medical research.

"MediaConsent is a very good platform that could be applied to many industries. Medical is the first industry, but I could see this applied to banking, government, to a whole lot of other sectors," she said.

ShareRoot showed there is strength in numbers in November last year, when it raised $780,000 for MediaConsent by issuing 260 million shares priced at $0.003 each.

"It's a structure that can attract further investment over time because we're also building a market-access opportunity ... which means adoption, and then commercialisation, of the platform can happen a lot faster, a lot sooner," said Ms Gallaher.